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When Dead Is Dead

Medical Ethics Distinguish a Person from a Body


Sunday, January 19, 2014
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Editor’s Note: This column may be emotionally difficult to read, especially for those who have recently lost loved ones.

Unless you have been off the media grid, you cannot have missed the recent national headline stories about the California teenager and a pregnant woman in Texas who were declared brain-dead and yet put on ventilators. Why? Well, that’s the question. Reverse their vegetative state? Bring them back to even a partially normal life? Keep their bodies from deteriorating?

Ben Bycel

For years, there has been a broad consensus among medical professionals, including medical ethicists, on the definition of brain-dead. In all 50 states, either through legislation or judicial decree, “brain death” has been defined as “irreversible cessation of all brain functions of the entire brain, including the brain stem.” In this condition a person cannot breathe on her own and is declared legally dead. There are, of course, some medical professionals who disagree with this definition.

Jahi McMath, 13, was declared brain-dead after an operation. What went wrong with the medical procedure is not known at this time. The specific issues in the case of the pregnant Texas woman are different from the general debate about brain death, so that case will not be discussed here.

Jahi’s family challenged the doctors and administrators’ decision at Children’s Hospital in Oakland who declared Jahi brain-dead. The family and their lawyer maintained that medical treatment had to be given to Jahi, even after the doctors declared her legally dead. They demanded that she be kept on a respirator and provided assisted feeding.

The hospital responded that it violated medical ethics to provide medical treatment to a dead person for whom the coroner had issued a death certificate.

The family’s lawyer successfully won a legal victory — which is not necessarily an ethical one — when the judge decided to temporarily keep Jahi on a ventilator for weeks after she was declared brain-dead, and eventually the lawyer won permission for the family to transfer Jahi to an undisclosed care facility, even though the judge expressed doubt about any possibility of her recovery.

At the time of this writing no one outside the family knows of her condition. Experts who have been consulted on what condition Jahi might be in have said, according to the Los Angeles Times, “… it’s inevitable that her body will continue to deteriorate and that any mechanical assistance rendered will only ‘maintain an illusion of life where none exists.’”

A brain-dead person is no longer alive. The term simply describes how the death was determined,” Laurence McCullough is quoted as saying in numerous publications. McCullough is a professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston. He went on to say that there are no ethical issues about the care of someone who is brain-dead, because the patient is now a corpse.

McCullough’s concerns also included the emotional, spiritual, and financial damage the parents will suffer: “Insurance doesn’t pay for dead people.” Dr. Daniel Sulmasy, a Franciscan brother who specializes in medical ethics at the University of Chicago, is quoted in the National Catholic Register as stating that if the diagnosis of brain death is accurate, there should be no further attempts to provide treatment.

Does the family have an ethical right to hold onto their daughter (call it body, if you want), as one writer put it, “under an illusion of life”? Why shouldn’t they believe in miracles? Jahi’s family lawyer said that “families — not a doctor — should determine death and that anything less would be a violation of the family’s right to freedom of religion.”

I think, as do the overwhelming majority of experts in the field, that this line of thinking is nonsensical. As Karin Klein pointed out in the Los Angeles Times, Dolan’s argument might allow a family to decide a relative is dead before the doctors do. Moreover, as Klein points out, what “sort of long-term care would be devoted to cadavers under this kind of scenario?”

One ethical dilemma that arises out of these cases is clear — should we, as a society, allow people who can afford to pay for the prolonged private care of their brain-dead family members to do so? If their family ethical beliefs dictate that they attempt to keep their loved one “alive” even after a diagnosis of brain death, should these beliefs trump those of science and medicine?

What about less wealthy people, with or without such ethical beliefs, who do not have the financial means but want to keep a brain-dead person alive in the back bedroom or at some facility?

While it may not be unethical to do as Jahi’s parents have done, I think it sets dangerous and unrealistic expectations and adds unnecessary cost to our health-care system. It’s also simply bad public policy to encourage people to believe that being brain-dead is a recoverable state. As heartless as it sounds — dead is dead.

This does not mean that if I were ever faced with the same situation as Jahi’s parents, I would not at least consider the option they choose. I would hope that I would deal with my grief quite differently and know when to say my tearful good-byes.

This column just scratches the surface of what is likely to become a profound problem, and that is the clash between rapidly evolving science and technologies and our ability to sort through what are authentic scientific ideas and innovations and what is merely junk science. These are bound to create a multitude of ethical dilemmas. I’ll keep the conversation going in upcoming columns.

Editor’s Note: This column was revised on January 19, 2014, to reflect that Jahi’s operation was not a “routine” one.

Benjamin Bycel is an attorney and writer. He was the founding executive director of the Los Angeles Ethics Commission and of the newly reconstituted Connecticut Ethics office. He serves as an expert witness in cases dealing with political and legal ethics. If you have an ethics question, send it to streetethics@independent.com.

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THANK YOU THANK YOU THANK YOU!! "At the time of this writing no one outside the family knows of her condition" This has really bothered me because the updates are from an attorney and no one really knows where this child's body is and what is being done to it.
I worry also about others getting on this bandwagon so to speak and bringing their loved ones' bodies home rather then letting that person rest in peace. At one point I sympathized with the family but now I am just really disgusted. This child had rights too...the right to be laid to rest instead of being a body on machines so that her family does not have to say goodbye to her.
When this all began I told my own 13 year old child what was happening in detail and asked him this question : If your brain no longer worked and you could not think or even breathe on your own what you want me to do? I explained brain death to him and that Jahi would never wake up, be able to play, walk, talk, eat or even open her eyes again. I told him how a machine was keeping her breathing and making her heart beat. He told me "Mom, I would not want to live like that! If I can't play video games or play ball and can't even talk or eat then let me die."
As for this family...Enough is Enough.....Dead is Dead...let this child go.

DianeLPN (anonymous profile)
January 19, 2014 at 6:44 a.m. (Suggest removal)

Would you please stop misinforming the public with statements like "what was supposed to be a routine operation." It was a far from routine, it was very complex and high risk. An adenotonsillectomy - removal of the tonsils and adenoids, a uvulopalatopharyngoplasty (UPPP) - removal of the uvula and submucous resection of bilateral inferior turbinates. This was performed on a morbidly obese type 2 diabetic. So this was not routine and there was a high amount of risk.

JustJo (anonymous profile)
January 19, 2014 at 6:52 a.m. (Suggest removal)

JustJo.....that is another one of those things that bothers me about this whole thing. The referral to "simple" tonsillectomy when we are aware it was much more involved then that. Having worked in hospitals and had surgery myself it is not simple when you go to ICU post-op. A "simple" tonsillectomy would have been put in a regular room after awaking in the recovery room.

DianeLPN (anonymous profile)
January 19, 2014 at 12:51 p.m. (Suggest removal)

This child had much more than a routine operation. The media also consistently ignores the fact that Jahi's problems began AFTER her family fed her a hamburger & freezing popsicle.

And then the grandmother proceeded to suction out the blood herself instead of waiting for a doctor to arrive.

I think this family is so guilt ridden by their own tragic mistakes that they refuse to let this child rest in peace.

I wonder how they can ever admit she is dead? Will her body have to start to show outward signs of decomposition before they are willing to bury this poor child? How do they get an updated version of a death certificate? Do they have to go to court to have the original certificate declared void so they can get a certificate with the date they finally admitted the truth?

I hope the courts know where this child's body has been taken. And I hope this facility and the family will be fully examined & held accountable for their actions after they finally give up this horrifying charade.

PeekerBoo (anonymous profile)
January 19, 2014 at 1:35 p.m. (Suggest removal)

The reports of her family's action are hearsay at this point. Although I must admit from their actions following Jahi's death and including her beloved uncle flying to Seattle for the game are questionable. For those who want the legal documents on this case: http://www.thaddeuspope.com/futilityc...

JustJo (anonymous profile)
January 19, 2014 at 7:57 p.m. (Suggest removal)

Her Uncle was at the game with Dolan...vultures on a carcass. http://web.stagram.com/p/637145930300...

JustJo (anonymous profile)
January 19, 2014 at 8:05 p.m. (Suggest removal)

I "Pulled the Plug", on my Mother in 1999 after she suffering a Stroke and went into a comma for three weeks before I had her life-support turned off (as per her Living Will). Brain scans showed no activity and the conditions deteriorated everyday for her body. I could see logic over blind selfish demands not to have a loved one die before I'm ready to bid their farewell but my brothers and sister and many other relatives could not, for that reason I don't have to worry about the holidays since no one regards me as alive in my family. Family. (Blood), is not thicker than water!

dou4now (anonymous profile)
January 23, 2014 at 7:11 a.m. (Suggest removal)

If insurance does not pay for corpses, then will that hospital be paid extra profit so this fiscal windfall can subsidize actually live people who cannot afford their medical costs? The occupied hospital room and equipment needs to be paid for if a live patient is not using that facility.

John_Adams (anonymous profile)
January 27, 2014 at 9:24 a.m. (Suggest removal)

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